Diagnosed with PA yesterday.

[Bigshooter]

Hi guys, New here, I was diagnosed with PA yesterday by a Rheumy,
put me on Sulfazine EC and Diclofenic Sodium and I already take Flexeril at night for muscle cramps.

I'm a little confused with the diagnosis as I have no joint pain, no fingernail pitting and the other stuff that is supposed to go along with PA.
My main pain is in my ribs, back and sternum, it hurts very badly, I can't sleep at night its so bad, I am hoping for some eventual relief so I can at least sleep.

I had my gallbladder taken out a few months ago because my doctor thought it was the problem but that solved nothing then I broke out is Psoriasis on my legs, arms and trunk.

I have already had problems at work, my boss made a comment this morning about me "always being sick" sort of sarcastically.

I called in sick on a Monday a few weeks ago because I hadn't slept all night and just couldn't get out of bed, Tuesday when I came in he chewed me out saying that "If I can't handle the job maybe I should do something else"
I tried to explain what was going on but his comment was that he's tired too Monday mornings but he sucks it up and goes to work.

I really don't know what I'm going to do if the pain doesn't get better, I can barely work but if I quit or get fired I lose my insurance.

I aplogize for unloading on all of you but I'm in pain and very frustrated.

[tmartha]

Hello - sorry to hear of the pain and troubles you're experiencing. Pain is bad enough - an insensitive and rude boss is another. We can be hard enough on ourselves about being limited by pain...!!

I have some pain in my back (lower to mid spine) but the other areas of pain I'm not familiar with, and I'm also not familiar with the meds you've been prescribed - but I know others have mentioned it and you're sure to get more info here. This has been a greatly supportive and educational place for me in the past 6 months - I hope you'll find the same.

Be sure to ask all the questions you need to of your doc (I keep lists!) - do you feel he/she was thorough and you could communicate well with him? Keep researching, and be persistent about finding the treatment that will help you. It can get so discouraging :( - but you will figure it out. Hang in there.

Please keep us posted -
Tani

[telecomgirl]

I hope you feel better soon!

Maybe you can get an pamphlet on PA to give to your boss?

My boss is very religious, and doesn't believe in sickness as a medical thing, but as a spiritual thing, therefore the sick days I take are like saying - I'm a sinner! So its a little uncomfortable, but he isn't confrontational, so that makes it a little easier.

[shea lynne]

I want to say welcome to the boards! I have had pa for 35 years and I haven't heard of the meds you mentioned either and I have taken alot of them. If these aren't working for you soon call your rhem back and maybe he can find something that works. As far as your boss is concerned he sounds like a very uncaring person. If you have a serious illness you do have rights so it might be a good idea to find out what they are. I have a great boss who has been very understanding even though I missed about 20 days during the school year.I have to work too to keep insurance. I am sure there will be lots of advice for you here. God Bless! Lynne

[evergreen]

Hey bigshooter! If your company has 'em, check your 'sick leave' policies and procedures and make sure you are complying...

[RichJ]

hi bigshooter,
sorry i can't help much but welcome to the p family. you have will meet some of the wonderful people on here and will find alot of great info. welcome and nice to meet you.

have a good night all

richard

[baldwin123]

Hi! Welcome, though sorry to see you going through such a rough time... I am on the meds you were just prescribed... Sulfazine EC is a Disease Modifying Anti Rheumatic Drug- it can take some time (weeks to months) to show results but is in the same "class" of drugs (DMARD) as Methotrexate which you hear others talk of...others here on the boards say sulfazine can cause nauseau esp at the beginning (there have been threads about) which I felt also but it got better for me over the first few weeks... the Diclofenac Sodium is also called voltaren, its a Nonsteroidal Anti-Inflammatory Drug (NSAID) which is used to control pain and inflammation especially until the DMARD starts to work- you may find as the sulfazine starts to work you won't need to rely on the voltaren as much, but it really made a difference in my pain- hopefully it will work as well for you... the flexeril (I also take sometimes) is a muscle relaxant- it makes me sooooo tired, its very hard to wake the next day, but I get very bad stiff necks and this really helps- it says in the literature that you should take 2-3 hours before bedtime to reduce the "hangover" effect of tiredness in the morning (maybe I'm so tired cause I never follow this advice?)!...I got most of my info from the Arthritis Foundation's 2006 Drug Guide which you can request free at Arthritis.org (the arthritis foundation website)...

As far as your boss goes, hang in there... would a doctors note help with absences? Literature about PA? Keep your chin up, and hope you feel better and that things improve...

Oh, there has also been a thread recently about pain in the ribs and sternum- sorry I am not able to connect that thread- but you might find more helpful info- please let us know how you are doing...
Jen

[mamaooch]

Hello,
Sorry you are feeling so bad. Like you I am in constant pain also. My ribs hurt everyday. If you get a chance, read the thread PA of Ribs on this site and you can read my whole story. Needless to say my PA is spreading and moving to my back and hips. It is progressing so fast even on meds that I will be seeing a rhemy at Duke this month. Read the thread, maybe it will help. I hope you find relief soon.

Take Care
Cindy

[floridian]

Could be a connection between the surgery and the P/PA ... ox bile has been used as a treatment for psoriaisis. Bile is an essential part of the physico-chemical barrier of the gut that protects against absorption of partially digested protein, which can make the immune system go haywire. Normally, bile is stored in the gall bladder and is pumped out when food is eaten. Without a bladder, it constantly flows out - but not enough when needed.

http://www.med-owl.com/psoriasis/tiki-index.php?page=Bile+Salts

Fasting has been shown to give temporary relief of psoriasis - don't know if you are able and inclined to go that route, but it is also worth considering.

[MikeK]

Hi Bigshooter,

Welcome to the Board! :cool: Nice to meet you. I'm sorry to hear about your diagnosis and that your boss isn't being very understanding. :(

Unfortunately, as Jen (baldwin123) mentioned, it can sometimes take several months for a particular treatment to start working. To further complicate things, a treatment that works for one person may or may not work for another. (Sigh) To futher complicate things, some doctors start with a less agressive therapy (such as Sulfasalazine) because many of the medications that are used to treat PA, (i.e., methotrexate (http://www.pdrhealth.com/drug_info/rxdrugprofiles/drugs/met1257.shtml)) (which you'll often see abbreviated here as MTX) either have some pretty severe potential side effects and/or are very expensive (i.e., the biologics (http://www.psoriasis.org/treatment/psoriasis/biologics/)). There may also be insurance reasons for starting you on the Sulfasazine. Since the biologics are so expensive, some insurance companies require that patients try and fail one of more of the less expensive treatments before they'll approve the use of a biologic.

Hopefully, the Sulfasalazine will kick in quickly. If it doesn't, then you might want to ask your rheumy if he'll prescribe a biologic for you. The biologics can also take a while to kick in (and they don't work for everyone) but they can also work faster then Sulfasalazine.

A lot of people who post here are on one of the biologics. A lot of people who post here use one of the biologic medications. Many of them are on a biologic called Enbrel (http://www.pdrhealth.com/drug_info/rxdrugprofiles/drugs/enb1159.shtml) so you'll see a lot of threads about it. Enbrel is given via self injection (kind of sort of like giving yourself an insulin shot). The good news is that most people report being pleased with the results that they have seen from Enbrel. (Head aches and injectin site reactions are probably the most common complaints about Enbrel.) The bad news is that Enbrel doesn't work for everyone and there have been about a dozen or so very sad posts from people who've developed some serious health problems that may or may not be related to Enbrel. (All of them blame Enbrel, but there is no way of knowing for sure.) FlakeyMatt has been chronicling his journey with Enbrel in this thread: http://www.psoriasis.org/forum/showthread.php?t=4276.

Some people have to take more then one medication -- i.e., a biologic and say MTX.

As I mentioned, the biologics are all very expensive so you may run into insurance issues. (The NPF has an insurance advocacy service that goes to bat for people who are having insurance issues. Here's a link to their description of their service: http://www.psoriasis.org/advocacy/assistance/insurance/index.php and here's a link to their contact information: http://www.psoriasis.org/contact/.) Some people have complained about very high co-payments for the biologic medications. The good news is that we're aware of several assistance programs that offer assistance to people who either don't have insurance or who have to deal with high medication related co-payments.

You may have some rights under the American's with Disabilities Act (http://www.usdoj.gov/crt/ada/) and/or the Family Medical Leave Act (http://www.dol.gov/esa/whd/fmla/). (Neither program will guarentee that you keep your job, but they may buy you some time until your medications kick in.)

The Spoon Theory (http://www.butyoudontlooksick.com/2004/11/the_spoon_theory.php) is a great way to explain some of the issues that people with PA have to deal with on a daily basis.

I hope this helps.

Good luck. Keep us posted. Let us know if you have any other questions and please don't be a stranger.

Mike

[luvwinnie]

I hope you feel better soon!

Maybe you can get an pamphlet on PA to give to your boss?

My boss is very religious, and doesn't believe in sickness as a medical thing, but as a spiritual thing, therefore the sick days I take are like saying - I'm a sinner! So its a little uncomfortable, but he isn't confrontational, so that makes it a little easier.

So he thinks if you are sick it's because you are a sinner??? What kind of religion is that?!?!

[luvwinnie]

So sorry you are in pain AND have to deal with a jerk for a boss. I'm on Enbrel and methotrexate and that combo has helped me a lot. Hope your meds kick in soon.

[baldwin123]

HI Bigshooter-
I forgot :) to tell you that in addition to the sulfazide and voltaren I also take a biologic response modifier- Humira- my doctor actually started me on the Humira (injection every 2 weeks) and voltaren immediately when I was diagnosed with PA... and we added in the sulfazide just 2 months ago as the humira, though it helps, hasn't stopped the progression of PA completely.....no two people present the same way, or respond the same way to meds, so unfortunately there is not one treatment protocol for PA, and no cure yet... Doctors seem to use these different classes of drugs (NSAIDS, DMRs and Biologic Response Modifiers (like Humira and Enbrel)) for the treatment of and to halt the progression of PA- some people see improvement with the psoriasis when on the biologic, though mine has not really improved- my dermatologist feels Enbrel is better for the psoriasis, but my rheumatologist prefers Humira for the PA, and my psoriasis is not terrible, just annoying! So I have been on Humira for 15 months now... This was only your first visit to the rheumatologist and you have had a lot to take in. I hope the meds are helping and that things are improving at work for you! Hang in there, and post if you ever need to!
Jen

[Bigshooter]

I appreciate all the responses, sooooooo much information to try and take in,
the meds seem to be helping already, my ribs hurt much less last night.
The Voltaren makes me somewhat sleepy though but other than that I'm getting along with the meds pretty well, no other side effects yet.
Interesting post regarding the bile, it is an odd coincidence that my psoriasis broke out like crazy after my gallbladder surgery.
Talked to my boss today and gave him some information on PA, he was a lot nicer about it today, maybe all it took was some information.
He's not really that bad but I am in car sales (yes its true..... car salesman on board) LOL, and its a pretty brutal business sometimes, perform or go away is pretty much the bottom line.

[Bigshooter]

I hope you feel better soon!

Maybe you can get an pamphlet on PA to give to your boss?

My boss is very religious, and doesn't believe in sickness as a medical thing, but as a spiritual thing, therefore the sick days I take are like saying - I'm a sinner! So its a little uncomfortable, but he isn't confrontational, so that makes it a little easier.

I'm glad your boss isn't controntational, I am a person of faith too but I would never intentionally make an employee feel as though they had done something wrong by being sick.

[MikeK]

If you get a chance, read the thread PA of Ribs on this site and you can read my whole story. Needless to say my PA is spreading and moving to my back and hips. It is progressing so fast even on meds that I will be seeing a rhemy at Duke this month. Read the thread, maybe it will help.I agree. Cindy's experience may be very helpful to you. Here's a link to her thread: http://www.psoriasis.org/forum/showthread.php?t=19511.

I hope this helps.

Mike

[MikeK]

I appreciate all the responses, sooooooo much information to try and take in,
the meds seem to be helping already, my ribs hurt much less last night.
The Voltaren makes me somewhat sleepy though but other than that I'm getting along with the meds pretty well, no other side effects yet.
Interesting post regarding the bile, it is an odd coincidence that my psoriasis broke out like crazy after my gallbladder surgery.
Talked to my boss today and gave him some information on PA, he was a lot nicer about it today, maybe all it took was some information.
He's not really that bad but I am in car sales (yes its true..... car salesman on board) LOL, and its a pretty brutal business sometimes, perform or go away is pretty much the bottom line.

You're very welcome. I'm glad that were were able to help and that you're feeling a little better! Hopefully, you're boss will eventually come around.

Keep us posted and let us know if you have any other questions.

Mike

[Allie]

I appreciate all the responses, sooooooo much information to try and take in,
the meds seem to be helping already, my ribs hurt much less last night.
The Voltaren makes me somewhat sleepy though but other than that I'm getting along with the meds pretty well, no other side effects yet.
Interesting post regarding the bile, it is an odd coincidence that my psoriasis broke out like crazy after my gallbladder surgery.
Talked to my boss today and gave him some information on PA, he was a lot nicer about it today, maybe all it took was some information.
He's not really that bad but I am in car sales (yes its true..... car salesman on board) LOL, and its a pretty brutal business sometimes, perform or go away is pretty much the bottom line.
Welcome Bigshooter,

Sorry to read you are in so much pain, but happy to see the meds are starting to give you a little relief. I believe, me more than anyone else here (unless we have other car salesman lurking ;), I understand what you are going through in relation to your job. My DH is a Sales Mgr, and a little plug for him, did the best out of 40 stores owned by his boss this past month. Sorry, that was off topic... But to do that well, my DH is a total JERK sometimes. I cannot tell you how many times I have had to tell him, "I AM NOT YOUR EMPLOYEE & IF I WAS, I'D QUIT!" For him to step back & deal. However that said, they do have a Finance Mgr with RA. My DH & the other 2 store Mgrs (Used Car & the GM) have to always pick up the slack for him. I am not going to say they like it, but because they understand this is NOT something he can control - it helps.

When I read your comment about "perform or leave" I had to laugh..... That is TOTALLY DH's mentality. However, if you are like most salesman you are on commission.... If this is the case, I believe you should have more flexibility... i.e. If you are not there you are not selling, therefore there is no add'l cost to the dealership. If your healthplan is like most, you need to try and work out a managable relationship. While, yes he may understand your sick from the material you provided, and he won't want to hear all the time how sick you are, maybe you can work out an "alternative" work schedule. Your days are GRUELING!! So instead of being scheduled 55 hours a week, you only schedule 35 (the number needed to maintain most insurances full-time employeed coverage) This way when it sprawls it will only be 45-50 hour weeks, instead of the 60-70 hour weeks it is now. Also by not being there as often you should feel better & be more productive when you are there.

Alright, I have to jet right now, as I have an early AM meeting, but I wanted to stop in and say a quick hi & welcome you to the boards... Smile, only 2 more days till your day off. :)

[sznicolas]

Hi Bigshooter
I am a DS (dry-skin), PA and P afflicted person. I used and still use an home made electromagnetic device twice a day for three-four minutes each time and each affected areas.
I am convinced that a weak, special-pulsed, bi-directional magnetic field is a solution for P related diseases.
If you are interested, check it out here:
http://www.psoriasis.org/forum/showthread.php?t=19895&PHPSESSID=1fef5e48bb48d42feb8755064afc6765
Using this very weak magnetic field generator in less than four months my PA and DS are gone. The MAG- Fd2 of CRMELECTONIQUE is technically close enough to my home made device.
If you are interested, check it out here: http://www.english.crmelectronique.ca/
Other devices which I have found on the Internet are to strong for a sensitive skin.

nicolas

[wildflowerAnn]

Apparently, there are many employers, including mine, who will not accomodate chronic illness and absences until the right combination of medications gets a severe disease under control. However, there are many employers who will. I have known two cancer survivors who missed a lot of work while being treated and getting into remission, and their jobs were held open for them. Some employers just don't want sick people in their ranks. Tell your doctor what your boss is saying, and he will support a disability application. You must have your physician's support to win a disability case.

Since you have PA, and you're in pain and the treatments are only so-so in helping at this time; you might want to go online and apply for SSDI. I did it.
There are two forms, and it takes hours and hours to fill out the two forms, but it was worth it. Gather all of your medical records that you have into an orderly binder; your work history, etc.; and then begin to fill out the forms. They ask what is your diagnosis, what meds are you taking, and how the disease and the medications affect your ability to show up for work, how PA limits your ability to do your work, household tasks, etc. The forms are confusing because they ask when you quit working. You have to explain in the remarks section that you expect to be on disability in the future. That will not hurt your application process.

Do it even while you're still working. Does your employer have a disability plan? Even if they don't, applying for SSDI now will get the clock started. It can take a year to get SSDI, and if your PA progresses, you will be well on your way to receiving SSDI, and then you can qualify for Medicare insurance.
Once I applied online, I had to go to the Social Security office and bring proof of citizenship, etc. It took one hour to go there, have the interview, and get my first denial letter since I'm still earning income. They told me to call them right away once my employer's disability package was approved, and the woman who assisted me told me to call her personally for the next step.
Even if things get better, and you can hold on, it won't be a waste of time to
begin the process of applying for disability insurance. You can always withdraw the application; and apply again at a later time if things change.



I've had to endure the "you have this disease because you are possessed by Satan"; and if you only truly believed, you would be healed remarks at work.
That is harrassment, but just consider the source and realize that you do have options. Until there is a surgical procedure to pull a person's head out of their rectum, we will always have to endure these attitudes and remarks.

Since your boss is basically selfish, I wouldn't trust this person. Don't tell anyone at work that you are applying for SSDI. Don't even post online here that you did it. Remember, your employer can read your posts here. Just do it, and quietly look for another job.
Ann